fatigue
When I started this website last year, it was my intention to write a short post each month to share resources and to hopefully inspire and connect with folks. However the summer of 2024 had other plans for me – in the form of pain, fatigue and brain fog from a flare up of my long term health condition. So I thought I would share a bit about my journey, in case it resonates with you.
Working with a long term health condition - my story
I have a long term health condition, called hypoparathyroidism. It is a rare condition, which affects approximately 1 in 100,000 people worldwide, and for most people with this condition over 80% acquired it post surgically, as I did – after surgery for thyroid cancer in 2012.
To treat my cancer, I had two neck surgeries and during the last surgery I woke up and several hours later my legs started to hurt and my lips were tingly (on top of being unable to speak properly as my vocal cord on the right side was temporarily paralyzed which lasted for several months). The pain and tingling was due to my blood calcium levels dropping quickly – my parathyroid glands were not working.
The parathyroid glands' whole purpose is to regulate calcium levels in the body. I spent an extra night in the hospital with a drip of calcium slowly bringing my blood calcium levels up to normal. This started a 12 year (and ongoing) journey with the side effects of this condition.
This means that I have gone from having an exquisitely responsive system to regulate and respond to the ever changing needs for my body for calcium (which by the way is every single cell in your body), to the blunt instrument of medication. Using medication means I am working blindly to try and balance the needs of my body, as I never know what my levels actually are. They also come with side effects which can show up as kidney stones or deposits of calcium in eyes, brain, etc, if my blood or urine calcium is too high. Or if my calcium is too low as fatigue, pain, brain fog, depression, anxiety and other neurological impacts.
As this is a rare condition, not many people, let alone GP’s or even endocrinologists, know how to manage it properly. And after finally finding a consultant who has experience of treating this condition, most times it is a condition that is very hard to manage properly, even if everyone, patient and doctors, are doing everything right. So pain, fatigue and other things are just part of living with this condition
The recent flare
So this past summer I had a bout of my calcium levels being all over the shop, and I have experienced some of the worst body pain, and fatigue ever. It felt unrelenting and the hard thing about it is there seems to be no rhyme or reason for it – the conditions in the body change (perhaps because of menopause, stress, or who knows!) and then I feel as if someone has pulled the cork out of my bottle and all my energy has drained away.
I have spent the last 6 months reacquainting myself with the landscape of extreme tiredness, and pain. And if you have ever experienced this before you will know that your brain stops working as well, and you feel as if your being starts to turn inwards – your head bows, your shoulders slump, feet shuffle and your compass turns in one direction, towards home and the couch or bed. And my ability to take in others is very limited as well, it all just starts to feel assaultive in a way, as every interaction takes energy and you feel like you are sipping air to be able to stay focused until you can just rest.
What did I discover in this recent flare up?
In the midst of all this, one thing I did not notice was self-pity – I was just responsive to what was needed. I was unapologetic about rescheduling things when I didn’t feel I had the spoons (more here on Spoon Theory and chronic fatigue), and I deeply cared for myself – prioritising what my body, and mind/heart needed to feel well. In short, I loved myself as fully as I could.
And the crazy thing about fatigue and body pain is that sometimes you need to “run towards the danger” that your mind is screaming at you about. Sometimes I needed to go out, see friends, go for a walk, get the groceries, even though my body said no. I needed to stretch myself, or I might start feeling unwell in more than my body!
In fact doing things sometimes gives me energy. But the thing is, I don’t always know what that will be! So that’s the thing with working with chronic health conditions, it's a lot of trial and error. And just because I feel terrible after doing something, it is not a time for beating myself up, but for noticing, “oh that had this effect” and then adding that to the complex landscape of what this illness means in my life.
Things I have learned from my illness:
The exquisite beauty of a nap - it's simple, but sometimes so hard, to just stop for 15-20 mins, be horizontal, and close my eyes. Often this is enough to regroup and have enough energy for what’s next.
Patience - with yourself and with others, you can only do what you can do, no more which comes from…
Acceptance - of your limitations, and non-resistance to how it is, goes a long way at making your more comfortable in the midst of feeling terrible.
Gratitude - my conditioning is one of taking things for granted – I have a relative amount of privilege – so having limitations has helped me to feel grateful for all the things I do have, which leads to…
Generosity - because of all that I have, even in the midst of feeling like crap, I want to be able to use whatever life force I do have to be of service
Surrender - I am truly not in control, and this leaves me feeling freer than I could ever feel if I was well, because there is no escaping this reality!
Great books on working with illness:
“How to be Sick” by Toni Bernhard - like a good friend who knows the territory and is sending you love letters from the way ahead.
“Radical Acceptance” by Tara Brach - the perennial classic on how to work with accepting life, exactly as it is from a Buddhist perspective
“Loving what is” by Byron Katie - this is a book, and a way of working with my experience that I came back to again and again, elegant, simple and oh so profound at finding liberation in any situation.